Monthly Archives: May 2018

*Satire* Vancouver is planning to ban disposable plastic straws despite it being an important accessibility tool for many disabled people

VANCOUVER–As Vancouver moves forward with a proposed ban on disposable plastic straws in a bid to reduce plastic waste, the city council is pleased with how the city’s businesses are preparing to deal with the ban.

The city’s many ice cream parlours have collectively decided to serve their milkshakes in plastic bowls and will be eaten with plastic spoons. As of this reporting, Wendy’s is still doing market research to determine if they need to rebrand their Frosty’s as soft serve ice cream.

Starbuck’s is planning on replacing the straws that are normally used to consume their signature Frappuccino’s with proprietary candy straws. Consequently the cost of a Frappuccino will be going up by $2.00. The company assures us that the candy straws are totally worth it.

7-11 has prematurely filed for bankruptcy because consumers have made it clear that Slurpees are definitely a beverage and they will not be pawned off on eating them out of plastic bowls with plastic spoons. Milkshakes are already ice cream so that adjustment while uncomfortable is acceptable but Slurpees just aren’t milkshakes ok.

Disabled people have pointed out that for many of them straws and disposable plastic straws specifically are an important accessibility tool that gives them access to necessary nutrition.

To them, everyone has explained “oh we’ll make an exception for you”

As of this writing, no one has actually elaborated on what that exception will be or how it will be implemented but this reporter has been repeatedly assured that it will be totally great and that no one needs to worry about it.

Vancouver city coucil concedes that straws are probably necessary to dribk bubble tea. A limited exception for bubble tea shops.

Well, I guess the environment is solved.

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

If you want to support my work but are unable to do so financially, please share this post on your various social media accounts.

Image Description: The cover of Nicola Griffith’s book “So Lucky”. The title and author’s name appear in a large font made to look like scraps of burning paper. They appear on a black background

When I was asked to write a review of Nicola Griffith’s upcoming novel “So Lucky” (to be released May 15) I had no idea that the most frustrating part of the process was going to be figuring out how to summarize the book without spoilers. I have ultimately decided to give up on that entirely and just copy and paste the summary of the book provided by the publisher. I will only preface this summary with the opinion that I think this summary is both misleading and does not do the book justice.

So Lucky is the sharp, surprising new novel by Nicola Griffith—the profoundly personal and emphatically political story of a confident woman forced to confront an unnerving new reality when in the space of a single week her wife leaves her and she is diagnosed with multiple sclerosis.

Mara Tagarelli is, professionally, the head of a multimillion-dollar AIDS foundation; personally, she is a committed martial artist. But her life has turned inside out like a sock. She can’t rely on family, her body is letting her down, and friends and colleagues are turning away—they treat her like a victim. She needs to break that narrative: build her own community, learn new strengths, and fight. But what do you do when you find out that the story you’ve been told, the story you’ve told yourself, is not true? How can you fight if you can’t trust your body? Who can you rely on if those around you don’t have your best interests at heart, and the systems designed to help do more harm than good? Mara makes a decision and acts, but her actions unleash monsters aimed squarely at the heart of her new community.

I went into reading this book knowing very little about it beyond the fact that the main character was dealing with the transition of becoming disabled as an adult. The main character, Mara gets a diagnosis of Multiple Sclerosis early on in the book. I also knew that the author, Nicola Griffith has multiple sclerosis. Griffith also co-hosts the #criplit Twitter chats with Alice Wong, founder of the Disability Visibility Project.

I genuinely think that the less you know about this book before reading it, the better. I also think that you should definitely read this book. It is a good story that is engagingly written. It also offers a great and realistic depiction of disability.

Any attempt to more clearly describe the book or even sections of it would inevitably lead to spoilers.

Now I fully admit that I don’t have MS. The closest I’ve ever come to experiencing MS is when a former coworker became convinced that my cerebral palsy was really MS and spent a week trying to convince me that I didn’t understand my own body. That said, there are a lot of moments in this book that deal with situations that are not diagnosis specific.

What I love most about this book is how real those moments of the disabled experience are. I loved reading about how Mara engages with her newfound disability and how she shifts how she interacts with the rest of the world. I love that she makes decisions that I disagree with. I love that she makes decisions that I wouldn’t because she considered an angle that I hadn’t. I love that she is a whole character with a real life.

Mara also offers a level of intersectionality that we rarely get to see in media representation of disability. She is a woman, she is queer, we get to see her navigate relationships, she isn’t desexualized, and she surrounds herself with a diverse group of friends and colleagues.

My only real criticism of the book is that the ending feels rushed. It’s a complete ending and all the loose ends are tied up but it just feels rushed. Basically, I finished it and wanted more.

The book is good and you should read it but I would be remiss if I didn’t acknowledge why this book is important to me. There have been so few opportunities in my life where I have been able to see myself in media. While, Mara and I are very different people with different disabilities, we still share common experiences. The way that Nicola Griffith navigates the nuances of disability feel more real than anything I’ve read by a nondisabled person. It is real and raw. Griffith doesn’t pull any punches just to seem more approachable for a nondisabled reader and even among what little fiction writing about disability by disabled writers there is, this is still a rarity.

I really hope that this will be the start of a trend and that there will be more books with unapologetically disabled characters that are written by people who really understand what that means.

So Lucky will be released on May 15, 2018 for more information on where and how you can purchase a copy click here.

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

If you want to support my work but are unable to do so financially, please share this post on your various social media accounts.

So April is over and with it “Autism Awareness Month” and what have we learned?

How much did you learn about autistic people?

Did you interact with autistic people?

What awareness campaigns did you participate in?

Did you give money to or purchase an item or service that shared a portion of the proceeds with an autism charity?

If you did the latter can you tell me the goals and intentions of that organization?

No?

I’m not surprised. Autism Awareness Month would more accurately be called “Autism Fundraising Month”. The month where everyone buys something with a puzzle piece on it and proclaims that they are raising awareness for autism. But what awareness is that? and has it done any good?

If you posted about the puzzle piece pedicure you got for Autism Awareness Month on Facebook and you can’t answer basic questions about autism much less the organization that benefitted from your spa day then you didn’t actually do anything for raising awareness. You attended a fundraiser and that is a different thing.

A fundraiser is an event where an organization solicits donations for their organization.

An awareness campaign should be where an organization starts putting that money to good use through meaningful, targeted learning objectives.

Getting a puzzle piece anything in April is really just a good way to show just how unaware of autistic people that you really are. The puzzle piece is, after all, a controversial image within the autistic community (here defined as actual autistic people only) many people do not like it. This information is pretty easy to find with a google search. And if you don’t actually care what actual autistic people think about things that directly impact them, then you can consider this academic study that came to the same conclusions (link leads to a paywall). The conclusions are pretty clear

If an organization’s intention for using puzzle-piece imagery is to evoke negative associations, our results suggest the organization’s use of puzzle-piece imagery is apt. However, if the organization’s intention is to evoke positive associations, our results suggest that puzzle-piece imagery should probably be avoided.

All those puzzle pieces and other vague statements of support for autistic people that nonautistic people proudly post about on social media do absolutely nothing to increase awareness and in some cases as with the wide array of autism inspired puzzle piece paraphernalia may actually be achieving the opposite of awareness. These images ultimately mislead people about what autism is and what it means to live in the world while autistic.

Beyond the fact that for the most part Autism Awareness Month campaigns have everything to do with fundraising and very little to do with awareness, the continued conflation of the two during April actively hurts autistic people. Not just because for an entire month we are inundated with distressing images that people have been misled into believing are helpful. Charities maintain a level of cultural status that often overshadows that of the people they claim to serve. So if an autistic person attempts to inform someone who has proudly displayed their participation in a fundraiser and presented it as an act of awareness raising that their action was at best meaningless and at worst actively harmful, that person is going to get defensive. It is not uncommon for people who have been challenged on their proud act of solidarity to shout down a member of the group they just publicly claimed to support. They’ll believe the charity over autistic people. Because the charity told them all they had to do was publicly say they supported autism awareness month and to put a slogan or a puzzle piece in some proximity to their person.

They were promised that an empty gesture and a financial donation were good enough. Being told that the action is functionally meaningless is unsurprisingly going to make them angry.

I’ve said it before that nondisabled people have set the bar for solidarity with disabled people at simply not actively hating us. But that tolerance only lasts until a disabled person tries to demand more. To demand real awareness and the accompanying acceptance that is really needed to raise our standing in society.

Yet, we must continue to call out individuals for their false solidarity. Nothing will change unless we do. People should not be left comfortably sitting in the lie that simply declaring solidarity and throwing money at a charity actually means that they care about autistic people.

Anyone who claims to have participated in an awareness campaign for any marginalized group of people should be able to answer the following questions.

What is your intention in publicly sharing your experiences with this campaign?

Who organized the campaign?

What does that group/organization do?

Were members of the group being advocated for involved in the planning and delivery of the campaign?

What do members of that group think about this kind of activity?

Did the campaign give you the opportunity to meaningfully engage with members of the group being advocated for?

What did you learn?

What information was new or surprising to you?

Can you explain the information you learned to someone else?

If you donated money, do you know what that money will be used for?

If answering any of those questions would be difficult for a person participating in your campaign then it has nothing to do with awareness and the responsible thing to do would be to remove any mention of awareness from the branding of that campaign.

Awareness requires that people know more than the basic fact that autistic people exist. If your version of awareness cannot lead to acceptance then your awareness is an illusion. You just want a metaphorical cookie for giving a charity money.

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

If you want to support my work but are unable to do so financially, please share this post on your various social media accounts.